These are the stories of us. These are the anecdotes of our days. This is the good bad and ugly (mostly good) of our not so unique, large (but not as large as some) family, living life to the fullest. Some of us might not have the average number of years generally allotted but we will fill each of those years with the celebration of family, friends and life

Sunday, May 27, 2012

The girl is a ROCK STAR! Three days after having a nail that runs the length of her calf removed, the bone reamed and another nail put in she is up and walking with no aids at all! It was rough in the beginning as we tried to get her pain management figured out but she is now handled with tylenol and advil and out at a movie with friends today!

I am quite sure I would be in bed, sobbing hysterically all the while hooked up to a morphine drip and anything else they might choose to give me and should the hospital been cheap on the drugs I might have had to order in copious amounts of alcohol!

Way to go Journey and here's hoping that after all you have been through in the last ten months with this leg that it will finally heal.

(as your mother and the one who loves you most might I suggest that there be no more creek jumping in your future?)

Saturday, May 26, 2012

In the year since Ailish died we have been admitted onto the same unit three times. Call me a sucker for punishment but each time I have wanted to go into room 14 where IT happened and just sit. What I wanted from the experience I'm not quite sure. Each time we were there the room was occupied so there was no opportunity to be in there except last night. I didn't get all the time I wanted as I had to deal with a minor emergency at home but in the end short of giving me more time to traumatize myself, it was probably enough. Allow me to give you the guided tour....

Why, might you ask would I go back to the scene of what is surely the most devastating event of my life and want to relive it? I have no hard and fast answer. I just know it was something I needed to do. Maybe it was a way to recapture the last time Ailish was alive? Maybe it was to ensure that what I remembered was accurate and by being in the space where it happened I could confirm what I believe are my facts. I don't want to forget that night even though it was surely traumatic. Letting go of that story would to me equate letting go of her birth story (or for us her adoption story).

The fact of losing a child is that as mothers we have birth stories and death stories. Each hold equal importance. I think those who have not lost children might not understand it but I believe that would be more to their feelings of discomfort surrounding death and also their love for us does not want to see us suffering. Fact of the matter is our suffering will be life long. It will go in waves. The further we get from the date of passing the more we might seem 'recovered' and for the most part no one without knowing us would know that only part of our heart beats. We can laugh, play, love anew and live fully but the intensity of the loss never leaves. There will be times of regression where sadness can take over for a few minutes, hours or maybe a few days. It can be caused by you feeling tired or unwell, or the way a picture catches your eye in a new way or even when you catch yourself adding your child into the roister of events that are occurring in a day only to remember that is no longer necessary. OR....it can be being forced into similar circumstances that took your child's life that include the same environment, people, smells, anxieties and having to once again place your trust in the same profession that failed your child and hope that history doesn't repeat itself with another.

As I have said before grief is stupid and I don't think there are any rules about it except there has to be progression forward. Even when there are steps back there has to be a point where you are further ahead than the day after the funeral and hopefully so much further.

along this wall was where at least four to six students (of what I don't know) stood looking about as stunned as I'm sure I did)

where I slept during our short stay and also where I stood watching the resident and the whole code team attempt to squeeze life back into my child. I don't know at what point I sat but was soon joined by Ailish's surgeon

the advanced piece of over relied upon piece of crap machinery that registered normal vital signs for the majority of the day thereby having no one give a full assessment or alert anyone to the obvious fact the kid was unconscious (but I'm not bitter)

where I sat as Ailish's lifeless body was placed into my arms

the clock that registered Ailish's time of death 9:32pm

Where Ailish lay all day, unresponsive while I begged her to wake up and not die. It was only me that had those fears...

The alert that sent a room full of people to us in record speed

where I filled a basin to give my child her last bath....forever

my vantage point from which I heard everything, saw mostly everything. All of it, particularly the events and comments that most disturbed or angered me I remember most clearly

Why, might you ask would I go back to the scene of what is surely the most devastating event of my life and want to relive it? I have no hard and fast answer. I just know it was something I needed to do. Maybe it was a way to recapture the last time Ailish was alive? Maybe it was to ensure that what I remembered was accurate and by being in the space where it happened I could confirm what I believe are my facts. I don't want to forget that night even though it was surely traumatic. Letting go of that story would to me equate letting go of her birth story (or for us her adoption story).

The fact of losing a child is that as mothers we have birth stories and death stories. Each hold equal importance. I think those who have not lost children might not understand it but I believe that would be more to their feelings of discomfort surrounding death and also their love for us does not want to see us suffering. Fact of the matter is our suffering will be life long. It will go in waves. The further we get from the date of passing the more we might seem 'recovered' and for the most part no one without knowing us would know that only part of our heart beats. We can laugh, play, love anew and live fully but the intensity of the loss never leaves. There will be times of regression where sadness can take over for a few minutes, hours or maybe a few days. It can be caused by you feeling tired or unwell, or the way a picture catches your eye in a new way or even when you catch yourself adding your child into the roister of events that are occurring in a day only to remember that is no longer necessary. OR....it can be being forced into similar circumstances that took your child's life that include the same environment, people, smells, anxieties and having to once again place your trust in the same profession that failed your child and hope that history doesn't repeat itself with another.

As I have said before grief is stupid and I don't think there are any rules about it except there has to be progression forward. Even when there are steps back there has to be a point where you are further ahead than the day after the funeral and hopefully so much further.

Loads and loads to say. Loads and loads of laundry to do. All exhausting. I am currently awaiting a call from the resident who is holding Journey hostage at the hospital. I have not been at the hospital every hour of every day this time which is both good and bad. The child is fifteen and has certainly had time away from home before and is doing quite well. Short of overnight not including surgery day I have been there more than not but you know when you are not there is when the doctors will come by. I know it is all part of the process of becoming a doctor and I respect it and am respectful of it but being on the receiving end of the ever changing rotation gets irritating. Maybe it's me that is the problem but I will never admit to it...

Journey is ready for discharge. I am ready for her to be discharged. The whole family is ready to resume what is a normal state of affairs for us. All the people that I have called on to help during this time are MORE than ready not to receive my mayday texts. The current issue is clearing the child for skills she does not need to have i.e. stairs with crutches....we have no stairs that she will have to maneuver....using crutches....the kid has poor balance and coordination for everything but walking. How do you think we got into this mess? Whatever in the brain (cerebellum I think) that handles those skills is definitely not working as it should. Bike riding is a challenge. She aint going to be doing crutches any differently than a walker which is doing find on. Because I was not there at the time of rounds I missed out on saying all these things.

Wednesday, May 23, 2012

After another long morning Journey was finally taken into surgery close to two o'clock. Even though our wait has been tough and disappointing at times I have to say the life of a surgeon is not a glamorous one. I have been witness to family plans being spoiled and endless work days. Combine that with dealing with the high emotional needs of their patients and their families I'm thinking there is a reason I was not gifted with a high enough intellect to become a doctor. I couldn't hack it. So much pressure.

Tuesday, May 22, 2012

Well today was to be surgery day. The plan was to remove the tibial nail that was inserted last August as the leg has some sort of fluid running through it that looks suspiciously like pus yet it grows nothing. They are going to remove the existing nail and replace it with a new one or an antibiotic nail with the potential for long term iv antibiotic treatment.

Journey was red listed which means she goes into surgery when there is time for her. We were expecting the end of the day but we had to be there at eight am in case there was a cancellation. There was not. We are also depending on a surgeon from another hospital down the road to come and assist as he has some expertise with this type of problem. He is a trauma surgeon. This the Tuesday after a long weekend. You do the math. The poor guy was dealing with sixteen trauma patients so that meant no time to hippityhop down the road to the children's hospital to do extras.

We got sent home about 12:45 and are to return tomorrow at eight am again in hopes of being done about two o'clock.

I am crazed with trying to organize child care for this shindig as are the people that I keep hounding to help me. It is no ones concern but mine regarding the number of children I have but even if I were single with say two other kids this would be stupid to plan for.

These then are my sage words of advice in parenting....if your child is going to have unexpected surgery you should try and have them hold off until all necessary details are taken care of.

Wednesday, May 16, 2012

The update on Journey is that we are hopeful. The trauma surgeon also experienced in infection who was called in to consult on Journey's leg does not believe her leg is infected. He recommends that the current nail in the tibia be removed and a larger one put in. If when he opens the leg and changes his mind about whether or not the accumulated fluid is pus he will will place a nail that is galvanized with antibiotic which would remain in place for over a month when it would be removed and another permanent? nail would be put in. I think with the at least three minds that have been pondering the leg for the last five days there is some dissension in the ranks and so hopefully once the leg is looked at again things will be clear. At this point this is great news from what was first thought on Friday.

Journey's underlying syndrome is trichorhinophalangeal syndrome type 1. In the literature it really has more of a skeletal impact though the anecdotal reports from those living with it implicate it as more of a multi system disorder. In posing the question on a mailing list I learned that those with the syndrome who have fractured bones all have had delayed bone healing. This has been the case with Journey for sure however there has been lymphedema and now this infection/noninfection. We are eight months past the fracture date.

Look! For at least a few short minutes they weren't trying to kill each other!

Surgery may or may not be next week. The doctor doing it is an adult orthopaedic surgeon who will come to the children's hospital to get the job done. I'm sure he has a pretty tight schedule and having to treat a patient outside of his hospital might take some time juggling not to mention our hospital which has been chocoblock full. At any rate the job will be done and I am hopeful the timing will be perfect.

Monday, May 14, 2012

Friday was the day of Journey's supposed 'Day' surgery. Ailish died on a Friday and from that point on Fridays have been Doomsday for me. They just have not been the same. Like most folks Fridays were the day I was excited to see. Last day of a scheduled week with the promise of fun, rest and relaxation for the coming two days. I don't get that so much anymore. It's not even that I plan on having a yucky day just because it's Friday but it just seems that the yuck comes naturally and then the realization will come that it is Friday.

That all being said Journey's little procedure to remove the screws from her tibial nail and fluid aspiration from her leg were being done on a Friday. I wasn't overly worried or concerned that things would go wrong and was looking forward to being able to go home after a long day and put it behind us for the weekend. Best laid plans....

As we are escorted into the unit we are taken directly to the exact spot where Ailish was admitted. There straight across from the bed was the rocking chair where I sat for about an hour rocking Ailish before surgery. Then when taken to the holding area outside the operating suites Journey's bed is parked...without word of a lie in the same spot where Ailish was last really awake and laughing! It gets better though when I found out Journey was taken to the same operating room where Ailish had her surgery! That was just too crazy.

It really is difficult no matter how much time has passed when you are thrown into the physical space where the most traumatic moments of your life took place. The mental videos that were on continual repeat for the last year have settled somewhat but being on the unit, walking past the "Code bucket" multiple times a day, seeing the room where she died over and over again really awakens feelings and thoughts that might have been successfully buried for short periods of time. Funny enough in regards to the room where Ailish died I would really and truly like to have the opportunity to go in there by myself, close my eyes and just 'feel' the room. I would even like to take pictures of the room. It might sound strange or weird but it is simply how I feel. I have said it before...grief is stupid and much of it doesn't make sense. What one person does while experiencing it or what one needs to do differs but I suppose as long as we keep moving forward it might all be functional. Maybe the patient in there will go home while we are there and an opportunity will arise before a new one is admitted for me to sneak in there.

And maybe, just maybe if I do get the chance to be in the room and do what I need to do psych will not be called....

No guarantees

where Ailish was admitted

the chair where we spent singing and laughing

The morgue. I never knew where it was in the hospital. Never gave it much thought before. Now I pass its corridor all the time

Where I went two days after she passed to sit and hold her for the very last time

Journey went away to camp and while there two days in they were on a bit of a hike. They had to cross a creek and there were two ways of doing it...walk across a slippery log or jump it. Journey thought she would fall off the log and break her leg so she thought jumping the creek was a better option. It might have been had she made it across. Instead what happened is she slammed into the side of the creek snapping her tibia and fibula. The camp was three hours away outside a small town and because it was determined she needed surgery she was transported back home.

There was nothing really remarkable about the surgery or immediate recovery. We learned she had small bones however and they had to use one of the smallest tibial nails they had to stabilize the bone. We carry on adapting to our new lifestyle and although the bones are slow to heal they are making progress.

October comes along and all of a sudden there is an increase in pain and swelling in the leg. Everyone immediately thinks blood clot and she is given the full work up to find...no clot. Diagnosis becomes lymphoma which requires special wraps twice a week etc etc. We adjust.

Bones continue to be slow to heal and Journey is having some discomfort with the feeling of the screws in the nail so a decision is made two months ago to remove the two at the bottom in hopes of hastening the healing. We had the option of doing the surgery before Disneyland but decided not to tempt fate and wait until after. I am psychic...make no mistake about it!

Last week...a week before surgery Journey starts to experience extreme pain in the leg, there's swelling and she says it feels like it's burning. We go to the ortho who gives her the full work up believing that she has an infection though systemically she really does not present that way. X-rays and blood work all come back fine. No new injury, no markers for infection. The ultrasound however shows a pocket of fluid over the fracture site. The decision is that when the ortho was in getting out the screws he would aspirate the fluid and see what he had. What he had was pus. Nice. He left the screws in and initiated the process we are in now. She's had a cat scan which showed not only the poorly healing bone but the fluid running through it and into the soft tissue. So lots of conversation has gone on between the surgeons with differing opinions on course of action and a consult has been requested from an adult ortho who has lots of experience working with trauma and infection from his time in Afghanistan.

That was Friday the 11th. Journey was admitted into the hospital though without the consult they were not going to do anything over the weekend so she came home on pass to go back in Sunday night so as not to miss the adult guy should he come in early. He didn't come in at all Monday. Turns out he had an extremely busy day that went into later at night so we wait until tomorrow in hopes that he will make it in and help in the decision making. The only new piece of information from today is that the 'pus' grew nothing. We were told however that fifty percent of the time that will happen. I believe this is more common in a chronic infection which obviously this had had to be as she has had plenty of blood work etc since the initial fracture and nothing has shown up indicating infection.

All I really know is that this is a BIG DEAL. With everything there is a worst case scenario and that has been explained to me but hopefully the options they have available to them will be successful and we won't have to worry about worse case scenario.

Oh and one of the best parts of this ordeal though it has not so much bearing on Journey's emotional well being but mine....when she broke her leg five months after Ailish died we were on the same unit a few doors down from THE ROOM. Because it is the orthopaedic unit we once again are on the same unit.
Good times.

Thursday, May 10, 2012

Not that long ago we had a premier of our province who was lauded by those who did the provincial books and hardcore business men as a king among men. He took a province in less than stellar financial standing and put us in a position of being thee province to be in. Not only were the books balanced but there was surplus as well.

I am not the least bit political. It is shameful how little I know about politics how it all works, whose who and what they do and what each sitting person stands are on anything. I am trying to be better as I am at a point in my life and in our family that it is past time to start making friends and influencing people. I think many citizens can live their lives with the understanding that the policies, procedures and decision making of the legislature have bearing on their lives as a whole but maybe not so much on a day to day basis. When living with a disability government decisions play a much greater role on the quality of life one can have.

So back to the former King of the province. I will concede that financially he improved things from the perspective of business folk and things looked fiscally fantastic. The unfortunate part to this story is that those successes from my uneducated vantage point were done on the backs of the province's most vulnerable. There were huge cutbacks to people with disabilities, education and health care. Hospitals were terribly short staffed and nursing graduates were taking jobs in any and all places except in the nursing field. Some were leaving the country in order to work as nurses. Home care nursing was a shambles. Supplies to patients with chronic health conditions living at home were severely reduced and one of his most brilliant ideas was to have all of the people who were incontinent to use cloth diapers! Ya that went over like a lead balloon! It never came to pass but the the fact it was even considered a reasonable concept baffles me. I suggested to anyone who would listen at the time (meaning just friends and family) that perhaps the man should wear cloth diapers for a day and then he could make an informed decision on the efficacy of them. I also wondered if he had an ailing parent would he want them sitting in their own waste in a cloth diaper. I would think he probably would not.

We have a program in our province called AISH which stands for Assured Income for the Severely Handicapped. People who qualify are adults who have mental health issues and/or cognitive and/or physical disabilities receive a monthly allowance and health benefits. At that time the amount was not great especially with the cost of living being what it was. Our well respected fearless leader referred publicly to AISH recipients as "Scums and bums". A stellar moment for our well respected premier. Not only did he care little about the well being of his most vulnerable constituents he had resorted to name calling. Essentially it appeared if you were not an employed tax payer you had little worth to the man and being he was a well supported leader we might assume his attitude was shared by many in his caucus.

Why is it you might wonder that I recount years gone by in my provincial history? About a year ago it was on the news that this former premier had been diagnosed with chronic obstructive pulmonary disease. I didn't hear much after but I just learned yesterday that the man is now living in a care facility and now has limited speech and mobility due to a form of senility.

It saddens me to hear that anyone develops a condition where they lose all that made them who they were. Once being top of his game, applauded by his country on so many levels. Having probably as many supporters as he did enemies what can be said about the man is that he made his mark on the world. He worked hard, did what he thought was in the best interests of the province and was successful in many arenas. He was in his prime the common man's premier. He made no bones about not being an intellectual but someone who did things that made sense. Within that there were hits and misses I guess.

While it saddens me to hear of this once vibrant man slowly losing not just his life but his faculties first I can't help but be interested in the correlation between him having so little respect for the most vulnerable in society and now he has become one. He is now dependent on the same profession that he had no work for, leaving patients in hospital in conditions where there was a dangerous shortage of nurses. Now we have a nursing shortage so no matter what the reason he potentially is reaping the same negative effective he created years back. I would like to be cruel and say I hope staff are making the man wait a bit before responding to his call button but that would totally go against my belief in compassionate care and unlike the man in his previous years I find great value in those who seemingly can't take care of themselves.

Sunday, May 6, 2012

Today I have learned is Bereaved Mother's Day. S'rsly?! Bereaved Mother's Day. Are there cards for this day? Are people supposed to be sending me flowers? If people don't know me or others who have lost a child are we to wear name tags or are our darkened eyes, slumped shoulders and shuffling gait enough to identify I us bereaved mothers?

I did not cease to be Ailish's mother the second she passed, the moment after cremation or at any time in the future. I do not need a special day to recognize that I lived in the presence of greatness for eleven years. Had Ailish been an only or the one of thirteen that she was I am and will forever be her mother. Please PLEASE remember my child and what she meant to her family and always know that I never stop grieving for her but in case anyone should want to wish me a Happy Dead Kid's Mother's Day...I'm good.

That being said I never pass up the opportunity for brunch or dinner out so if anyone should happen to know of a dead kid's Mother's Day Brunch....I'm there.

Saturday, May 5, 2012

A little young to find her Knight in Shining Armor(I gave him my number and told him to call me)

Tonight Malia and I attended the Cerebral Palsy Association of Alberta's annual gala. Malia was in attendance for cute factor and pint size ambassador for kids with cerebral palsy with the thought that who couldn't empty their wallet when such adorability was present. The child had me worried today and pretty much every day since the idea was posed to bring her to gala. Malia can be...shall we say...unpredictable and explosive. She is either going to charm or she is going to crash and burn taking names and numbers with her. Malia was F.O.U.L today. Tonight had the potential to be miserable but fortunately Malia rose to the occasion and everyone was her friend.

not really sleeping but thinking she really should have had that nap this afternoon

When asked about how much money we should ask folks for and what the organization would do with it Malia's reply was "600$ so that I can buy a Blackberry Torch like my sisters

It was a Medieval theme

Star in the making

Beauty

The evening ended a bit on a sour note for the girl when in her exhaustion she stumbled and hit her throat area on the edge of a table. This put her into mild hysterics with coughing, gagging and cries that she was going to throw up. As we walked past the casino in the venue it continued with her promise that she was going to throw up and she was going to be sick all tomorrow morning. As I am a sympathetic mother I calmly explained that is how many people feel when leaving a casino...

Wednesday, May 2, 2012

When we travelled to Disneyland in 2002 I took some pictures of Ailish in this garden in this exact spot. So are these pictures suffering from poor photography or a light of a different kind? You be the judge.

There's a bus driver for some of the kids that we see every day that Malia has taken a shine to and something he reciprocates. She likes him because he lets her on the bus while I take her sisters' seat belts off and most recently lets her beep the horn. Who wouldn't like him just for that alone! The fellow is getting braver at asking me questions about the family as his curiosity is getting the better of him. Today he asked what is going on with Malia's left leg. I told him she has cerebral palsy down her left side. He then asked about her eyes. Being no dummy he has noticed she needs to be on top of some things to see them. I told him she is legally blind.

Tuesday, May 1, 2012

The older I get the more frustrated I become with things that don't make sense. My impatience for things that take up my time that are unnecessary in my life is at an all time high. I don't ever use the size of my family as an excuse for my failures or inadequacies because most times it wouldn't matter if I had one other child or another ten (your mouth to God's ear!) and I will do whatever I can to do as I'm asked, contribute to those around me or lend a helping hand when I see one needed. That being said I get really peeved when I am asked to do things that don't make sense, have little value in my life and only serve to meet a generalized bureaucratic requirement. This takes time away from my family, money out of my pocket and leaves me and my family no further ahead.

I just wish that when making requests of my time when y'all know I'm busy that it would make sense. So much in this life time does not make sense and when we have the capacity to assert control please folks...don't be stupid! Use your control for good....not for purposes making my head explode.

If I teach you nothing I must make this abundantly clear...it's all about me! Before making plans, rules, regulations, requirements....think of me first and what meets my needs. That's all I'm asking.